Monday, July 19, 2010

Amy Julia Becker, mom to William (left) and Penny (right) is a writer and recent graduate of Princeton Theological Seminary in New Jersey. At Thin Places she blogs about "theology, disability, children and parenting, education, and the intersection of grief and hope." Here she writes about a developmental stage that stresses many parents, but which can be especially sensitive for parents of children with disabilities: potty training. Thanks for sharing Amy Julia!

Potty training: It's not a raceBy Amy Julia Becker

I was all set to write a victorious essay about how we had crossed the final potty-training hurdle. Seven days without an accident, even at night. No more Pull-ups, no more rubber underpants, no more carseat cushions in the washing machine, no more worries about our daughter sitting on the couch without a towel underneath her. Two years after we first started working on it, I thought we were done.

And then, Penny visited my grandmother and when she got up, there was a wet spot on the chair. And then, when we were outside this afternoon she looked at me, eyes wide: “Tinkle accident Mom!”

So we aren’t quite there after all. We’ve made some good progress, and I’m celebrating just the same.

Sometimes I’m asked, “What’s the hardest thing about having a child with Down syndrome?” And I reply, at least half serious, “Potty training.” Sure, the trips to the hospital for her heart procedure and hearing tests and the Emergency Room visits were more immediately stressful. And the question of social stigma when it comes to having a disability looms large as Penny gets older. IEP’s, routine checkups with a host of specialists, routine questions or comments that betray ignorance about who Penny is—all of those are tough. But when it comes to a daily struggle, potty training has been the hardest of all.

I was ambitious when we started. Penny was 2½, and I was convinced that with enough willpower on my part, she could learn to use the potty. I had heard plenty of moms with typically developing children say, “I just chose a week in the summer and put them in underpants, and by the end of the week we were done.” I knew it might take a little longer, but I figured Penny really wasn’t that different from all the other kids.

Then came the moment. Penny was sitting on the wooden stairs in my parent’s house, and she stood up with a puddle underneath her. I almost burst into tears. And I heard the disappointment in my voice as I said, “Oh, Penny!” It was then that I knew that this goal was for me, not for her. We put the underwear away for nearly a year.

The funny thing was, even in her Pull-up, Penny would wander into our room in the middle of the night and say, “I need to go potty.” And she would. Nearly every night. Last June, we were on a long car trip, and she said, “I need to go potty.” She held it for twenty minutes as we looked for a place to exit the highway. These moments helped me to realize that in this area, she really is different from other kids. If she’s on a playground, with her body and brain focused upon climbing a ladder or hanging from a bar, she doesn’t “hear” the signals that she needs to go. If she’s sitting still or sound asleep—if the rest of her body is quiet—then she does. And then there’s her low muscle tone, which makes it harder to hold it in even if she knows she needs to. Not to mention the impulsivity that makes her prefer to keep playing, even with wet underwear. I started to understand Penny’s hurdles, and I started to respect her more with every try.

So we bought training pants—super absorbent white underwear with strong elastic to prevent further leaking. And we did a lot, a lot, of laundry. We stopped paying attention if she had an accident, and started praising her effusively when she succeeded in going on the potty. For a time, we used M&M’s as a reward. Eventually, we got into a rhythm. Every two to two-and-a-half hours, we take a trip to the potty. She’s become more and more compliant the more successful she’s been. And once it was clear that a day without accidents was a distinct possibility—once it was clear that she could succeed—we introduced “star” days. After her first star day, we all got ice cream. Then, two in a row, and more chocolate yumminess dripped down her white shirt. Then, three in a row. Four. We don’t even talk about star days anymore. But we are working on helping Penny tell us before she needs to go, and we may use stars again once she starts to be able to do so.

Potty training has taken a long time. A really long time. It has set us apart from other families. And it has forced me to listen to Penny. In her own way, she asked me to slow down, to get to know her. She asked me to continue to learn how to love her—not for who I thought I wanted her to be, but, acknowledging her needs and her abilities, for who she is. Potty training has been one of the hardest aspects to our life with a child with Down syndrome. It’s also been one of the best.

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comments:

I think all of us parents could use a reminder that potty training requires us to see and accommodate our kids' unique qualities. So often, it IS portrayed as a race, as a measure of good vs. bad parenting, or as a measure of whether children are spoiled or appropriately limited/disciplined.

I hated potty training my kids. Hated it. Part of that was the inherent messiness plus needing to re-engineer our entire schedule to accommodate the potty. But it was made even harder by smug parents confident that their superior method was what made their potty-training experience easy (as opposed to other parents who also had a pretty easy experience, but who recognized this as a stroke of great good fortune, not a reflection of their or their children's brilliance). And by older women who never miss a chance to talk about how their kids were trained at two years old and they don't understand why we modern mothers insist on holding off until our kids' third birthdays.

My sister always had a theory that post-training accidents (those that continue to happen now and then even after a child is technically potty trained) always happen in threes. I've found this to be surprisingly accurate. My 4-year-old wet his bed twice last week; I figure the third will come any day. Being prepared makes it easier to keep that disappointment out of my voice!

I loved this post very much -- and found myself nodding my head, completely relating to all of it.

We began *seriously* potty training Gabriel last July. He turned four years old and I knew I had waited long enough. I, like many other parents, believed that it could only take a short time.

However, here we are, one year later, and although the successes are outweighing the "accidents", I would consider us still in "the race".

It's been hard to be consistent in our acceptance that it just takes longer for Gabe, we're continuously proud of his efforts. Like Becker pointed out, Gabe doesn't get those body messages when he is focused on something else. It takes a lot of reminders, a fixed schedule, and Smarties. That's just how it is...

Today, when he first woke up, I asked him if he needed to go. He refused. Then, begrudgingly he did go on his own accord, and he told me that he would stay dry because he is proud of himself. His words, not mine. I realized how important it is for Gabe, too, to have these successes. :)

I think this is a post that will resonate with many, many families. In addition to a child's being "trained" (or not) not being reflective of parenting, it's also not reflective of a child's worth! Independent toileting won't be possible for some kids with disabilities. I'm glad you wrote about a topic that has caused too much stress for too many parents!

I loved this post too. For me, I have a "typically" developing 3.5 year old and Jillian who has CP and almost 2. My almost 3.5 year old isn't potty trained yet. I of course had concerns about this. After hearing from other families how easy it is to train children. I felt defeated and confused. I asked ALL of Jillian's specialists if it was a problem Lauren wasn't potty trained yet. They all told me that SHE is also dealing with a lot having a "special needs" sibling. So, I understand. I get up, change more diapers and am thankful they're in my life.

I know this suggestion seems odd to many, but I am a proponent of diaper changing in standing. Of the several benefits is that the child is not in a laying down position - which wreaks of dependency. I was talking to a parent of a child with autism the other day. She has mastered the standing-diaper-change but her child is going through a hitting phase and the close proximity is a problem. I suggested the child face away from the parent during changing - perhaps to a strategically placed mirror.

For children who do not stand independently, they might place their hands on the wall for stability.

Potty-training is such a different journey when special needs are involved, I'm discovering! My daughter is six and we've only recently started training in earnest (she's on the autism spectrum). Just willingness to even sit on the toilet is an issue, let alone willingness to "produce." We were delighted yesterday morning when we timed one sitting at twelve whole minutes! Each little step forward is important.

By the way, Barbara/TherExtras has great ideas. And she always seems to discover the good blogs before I do. ;-)

I am so happy to read that you went through the same things I did/am going through!!Same joy, same frustration, same laundry loads!!

We've been working with Kiera's potty training for two years now. We started at school and got to a point where she'd be dry from 8.30 am to 3.30 pm and once she came home the accidents started. It was my busy mom-of-three schedule and very little patience though that were to blame.

At the beginning of this Summer my parents came for their visit and we started to be on top of Kiera's potty schedule and voila'! She's been having dry day after dry day. There are still accidents (when she's too busy or too tiered to be bothered to use the potty) but most of the time she's a potty champ!We also have been working on having her tell us when she has to go, though it's really sporadic that she does and usually it's in the middle of the night!

Amy Julia, thank you as usual for giving me hope and letting me know that we're not alone in this quest:)

PS: Good luck with William. We tried with Ava but she's not ready yet. She even told us: "Mom stop with the potty. It's not working for me!"

Shhh... let me say it quietly... it can take a very, very long time. At 18, my daughter still has problems realizing that a visit to the loo in in the next half hour would be a good idea. So she has learned to make regular visits during the day whether she feels she needs to or not, and I generally follow up "we're going out in five minutes" with "go to the bathroom, dear." So my message is, it ain't over till it's over, and I hope you can all be more patient than I was.

Have you heard of Elimination Communication or EC? It's a way of potty training without using diapers (cloth or otherwise) that uses cues, signals, timing, and a bunch of other instinctual communication between parent and child to train your kids to use the toilet.

I feel the pain. My daughter is delayed developmentally and also low muscle tone along with some of the autism spectrum too. I thought she was making progress after us trying so hard. maybe too hard. She backtracked during the school year. but really she has a hard time taking it in. I try and try and nothing does click right now. Shes a dev. age of 2 yrs. old. Right now its back to diapers. I'm thankful for those because it has relieved a lot of tension and stress between us. Shes going to senior kindergarten this year. Maybe she'll progress with everything else during the year with having no stress over this issue.

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